Coping with the cost of autism

Last year, bills were introduced in both the Missouri House and Senate to mandate insurance coverage for autism therapies, but neither made it into law.

Amye Buckley

Last year, bills were introduced in both the Missouri House and Senate to mandate insurance coverage for autism therapies, but neither made it into law.

This year has seen an encore of those efforts. A combination bill, House Bill 1311-1341, would allow up to $36,000 a year for applied behavior analysis therapy for those younger than 19, and Senate Bill 618 would require up to $55,000 in coverage per year for ABA therapy for those younger than 21.

There are many issues surrounding autism, but families cannot forget about the cost.

Nikki Straw served on Missouri’s Blue Ribbon Panel which created a comprehensive plan for autism care, and she has served as a past chair of the State Parent Advisory Committee. The only insurance she has seen that provides any aid for autism is TRICARE. Other companies, she said, deny the claims.

“We’ve got so many families that have gone bankrupt and I know what it’s like to be on the end of that. What can you do if you’ve got a child that’s got a catastrophic illness and you’ve got to deal with them the rest of their life and you find something that works for them and you can’t afford it?” she said. “You’ll do anything you can. You’ll sell your soul. You’ll do whatever it takes. You love that kid and you’re going to do whatever it takes to help them – you’re going to do anything.”

She points to the cost in Medicaid as families run out of money and sign up for aid for their child.

“We’re paying it already,” Straw said. “Our families need it.”

Senator Gary Nodler, R-Joplin, said he voted for the Senate version of the bill and believes there is widespread support across the Senate.

He cited the new numbers released by the Center for Disease Control a diagnosis rate of 1 in 110 for autism spectrum disorder and noted that each new study seems to find more children afflicted by the disorder.

“The frequency is increasing at a very dramatic rate,” Nodler said.

Whatever passes will add to costs cost for employers and small businesses, but not having a solution is no longer acceptable.

While Rep. Kevin Wilson, R-Neosho said last year’s efforts were unsuccessful largely because of a lack of consensus and information. In May House Speaker Ron Richard created an interim committee to look at the issue. Since that time Wilson, House health insurance committee chair, said lawmakers have met with both parents and representatives from the insurance industry to draft something better. Insurance companies wanted the right to review treatment for medical necessity and the state needs some oversight as well. His goal, he said, was to make ABA therapy accessible with insurance coverage, but to keep costs manageable.

“The amount of time and effort that went into this from May until now proves to me that the bill that was out last year — it would not have been the best decision to push that through in the last two weeks of session,” Wilson said. “The bill we have now is a much better bill.”

Straw wants to hope, but is afraid that neither bill will pass. She is particularly concerned about a provision in the House bill requiring credentialing of ABA therapists who, she said, should be licensed, but she is worried that will limit credentialed therapists to only autistic children when children with learning disorders could benefit.

Wilson said he fought to have the provision included, noting that without the state’s requirement they would have no recourse at the state level against fraudulent ABA therapists.

“A lot of parents were afraid of this,” Wilson said. “But we put safeguards in there to make sure that if someone is providing services they were grandfathered until such times as they could get registered.”

Insurance will help but not solve the problem, said Tracy McCormick, TouchPoint coordinator. TouchPoint is a non-profit organization contracts with the state to provide services, but if there was insurance coverage they could do more. ABA therapy can be expensive and many families cannot afford it.

Paula Baker, Ozark Center CEO said they would expand the existing preschool program if the bill passes. Early intervention is crucial, but autism is pervasive.

Insurance reform, Baker said, is central to improving services. If an insurance bill passes then it will go into effect Aug. 28 and Baker said they would be ready with new programming adding kindergarten or after school and weekend programs.

“I think the hope it gives the children and their families is the greatest gift of all,” Baker said.

Neosho Daily News

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